My wife was diagnosed some 2 years ago with LBD and became quite violent about one year ago. Was placed on most of drugs frequently listed in this forum - with no success. Was moved to another facility and a new psychiatrist who ordered fanapt - (a relatively new drug-2009) It's a drug I never see in these forums. Its being used off-label since meant for schizophrenia. My sons are MDs and hesitant to use fanapt - but finally agreed as "sort of a last resort." Fanapt (in very low dose) has significantly reduced the aggressive/violent episodes and at the same time my wife has become much more alert and communicative - and has remained relatively stable for the past 7 months. Psychiatrist claims it is used considerably in Europe where he trained and where he also claims, LBD has been much more frequently diagnosed than in US. Has anyone "heard of" fanapt for LBD?

Fri Jan 04, 2013 8:18 pm

labeckett

Joined: Thu Apr 21, 2011 9:07 pmPosts: 248

Re: Fanapt - a different drug used in LBD

Hi,I took a quick look at the medical literature. There was a pretty comprehensive review of off-label use of the atypical antipsychotics (the class that includes fanapt, also called iloperidone) published in 2012 (Maher et al, J Manag Care Pharm, 2012 Jun;18(5 Suppl B):S1-20.) They could not find any clinical trials using iloperidone off label, such as trials in LBD or other dementia. So there is not much published evidence one way or another. An overview of its use in schizophrenia found no reports of extrapyramidal signs, which is good for our LBD group, but orthostatic hypotension is pretty common, which could cause problems with the LBD patients. (See Citrome, J Clin Psychiatry, 2011;72 Suppl 1:19-23. )

So the less technical answer is that there is no published data about its use or efficacy in LBD patients, and it has a relatively benign profile of side effects that might be relevant to us, but watch out for tendencies for dizziness/ fainting when getting up. Hope that helps!

labeckett, thanks for the effort and info. My wife actually exhibited more dizziness and fainting on the other commonly used meds - has not since on fanapt. The schizophrenic dose is between 12-25mg. My wife started on 4 mg - then up to 8 mg. which made her almost comotose. Was backed down to 3 mg. My sons question if its even a therapeutic dose at that level. Her Parkinson's has increased but not to the point where is receiving med for it. Her most difficult remaining "violent" characteristic is getting dressed in the morning. It generally takes an aide and myself and has been compared to dressing three chimp adolescents simultaneously! Finally, fanapt has not reduced her amazing strength - especially in grasping both objects and unsuspecting physicians.

Sat Jan 05, 2013 8:15 am

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Fanapt - a different drug used in LBD

Amazing, isn't it, how strong their grasp can be when most other body parts are not working... In the end my dad was so weak everywhere, yet his grip could have just about crushed another person's hand. Glad you have found a med that helps reduce the aggressive symptoms. This is an awful disease, so I'm glad something is helping. Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Sat Jan 05, 2013 9:03 am

labeckett

Joined: Thu Apr 21, 2011 9:07 pmPosts: 248

Re: Fanapt - a different drug used in LBD

Hi, I'm so glad this is working for you - it seems that with LBD there is so much variation from person to person, and so little in the way of Phase III clinical trials or other serious evidence-based medicine, that we mostly have to go by seeing what works best, and avoiding those meds known to have bad side effect profiles. And, as you have wisely done, starting with low doses and titrating up if need be. Metabolism is so much slower and sometimes even different in older people that it seems we need to view almost all dosage recommendations with great caution.

My mom has, thank goodness, not had any aggressive symptoms, but her most striking initial presentation was very disturbing delusions and occasional hallucinations. So far that has been relatively contained by a pretty low dose of quetiapine. The main side effect has been drowsiness, but since that goes with advancing LBD, too, it could just be disease progression.

This is a very tough disease for families and also for physicians. i hope we are able to make some progress soon in more precise diagnosis, so we can get more targeted therapies and clinical trials. Short of that, though, we are all just managing as best we can, and learning as much from each other as possible... Glad you were able to share this information -Laurel

Misterboo, Welcome to the LBDA forums, glad you found us. Laurel, thanks for taking a look at the literature on this medication as I have never heard of it either and glad that it is helping with Misterboos wife, but even with medications that are approved for LBD we never know from person to person so I say anything is worth a try as long as families realize that each person reacts so differently to medications.

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